How To Be With A Disabled Person

untitled, 1993, 4″ x 1″, ceramic
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1. I HAVEN’T STOPPED LOVING YOU- I JUST HAVE TO LOVE MYSELF MORE

I know that people who care about me want so much to let me know they are here for me in whatever way I might need. The thing is: I often DON’T KNOW WHAT THAT IS because this is such uncharted territory; for both me and my compadres. I have had to pull into myself and rearrange my values, needs, desires, finances, spirituality, social life, closet, pet care, diet, exercise and living situation. IF I have any juice left over- you will get it, I promise. Believe me, this takes a big dose of “BE NICE TO YOURSELF, CATH…” I beat myself up because I am so much less available to you and I don’t really like it.

2. THINGS YOU COULD DO TO HELP ME

When you ask me “What can I do?” it puts an extra burden on me to come up with something to take care of YOUR desire to ease my way. Think about it: If your own life were to feel more narrow in physical ways; say you had little energy and couldn’t get out in the world as much, what things would bring life to your door and ease your way?

Things I love:
a. My sister sends me books she has liked.
b. Magazines make my world wider: spirituality, design, nature, science, smart women’s mags. DVDs from SAM’s (cheap!)
c. bring me soup or stew to last a couple days or food from a restaurant I love.
d. beauty (flowers, girly stuff I can no longer afford, great DVD on art, nature, ANYthing you think I’d like.. book on tape)
e. offer to fix stuff in my home
f. ask if you could do an errand for me- mail p/u, drugstore, office supply
g. tell me about a great website you think I’d like
h. offer to take me on a drive in nature
i. take my dog for a walk if it snows and I can’t get out
j. tell me you love me no matter what
k. one friend lets me know she is thrilled when I get really bitchy and really let it rip. we laugh and I feel released.

3. I CARE THAT YOU KNOW HOW MUCH WHAT YOU DO MEANS TO ME AND WORRY YOU DON’T FEEL ACKNOWLEDGED ENOUGH

It is human nature to want a good deed acknowledged and to feel better about yourself after an effort expended on someone else’s behalf. Know that I try my best but won’t always get it right.

4. DON’T STAY TOO LONG

My cut-off point for a visit from you is an hour- maybe an hour and a half on a good day. I love our time together and need it but I get tired quickly. Sometimes just dropping things at my door works better (always with a ‘heads-up’ call first) so I’m not forced to make myself presentable if I haven’t the energy. Email works great for me as opposed to phone conversations. I can choose when I can be most present and connect from there. Lacking in intimacy but a sacrifice I seem to need.

5. OPEN DOORS FOR ME (even bathrooms if you are near and see I could use the help)

Just say: “May I help you with this?” gives me the opportunity to decide. I always love the little (sometimes big) opportunity to connect with someone in this way. There aren’t really that many times to safely feel like we can offer assistance to someone in need in our culture. Sometimes homeless people look a little scary though we might want to ease their way. When someone offers to open my door, I look them straight in the eye and say: “Thank you so much. I appreciate that.” I feel good. They feel good.

6. I KNOW YOU WANT TO FIX ME

Don’t forget this is my journey with horrors as well as miracles along the way just like yours. You may be very sure you would know how to do my journey differently and better were it you in my shoes.
Perhaps so. I pray you’ll never know. I am doing the very best I can; making mistakes, having success… Please don’t feel sorry for me. My road has treasures strewn about every which way I look… Now if I could only bend down to get them!! Honestly- I love my life even with all this challenge. Really.

7. I COULDN’T DO THIS WITHOUT YOU

Just knowing you are there and care about me eases my way like you will never know.

A great post. Definitely worth bookmarking. I not only like its content but also appreciate your new format.

Lori on
December 15th, 2011

Thank you so much for these thoughts. I have a dear friend who has Lyme disease as well as a traumatic brain injury. Your words have helped me to see not only your world but her world more clearly … and the things she needs but is not able to let those of us who love her know. I am happy to hear you are enjoying your new place so much and loving your life despite the challenges … after all – it is the only life we have … Regardless. XX

Cathy, I’ve been thinking about this post and the theme on and off for a while now. I’ve been recently navigating some extraordinarily stressful events (illness, real estate short sale dealing with brutal piranhas even though I was current on my mortgage, arranging for a cross-state move, surgery on skull, taking care of myself afterwards while dealing with the above and starting to pack, arranging for a family member, my dad, to come and help on the serious packing, figuring out how to close my place down with integrity even though the real estate transaction is hanging, oh, and arranging for a new place in a new state, etc.).

It seems as though I so have to protect myself more than usual. So, many people don’t understand that I’m clinging by my fingernails in survival mode. They just *need* to see me one more time to say goodbye. I sometimes felt clawed at. Others decided to help in a very decisive way yet disregarding some of my clearly stated wishes and quite overwhelming me with their endeavors. I don’t want to be ungrateful but would just like to hide for a bit.

I’ve moved to a place where I only know family. I guess my take away is to carefully assess people’s boundaries when I’m at the beginning of a friendship stage in addition to making my voice even stronger. And, especially yes to #4 (really, really) and #6 (I hate comforting people, usually men, who are having a difficult time accepting my realities — this still happens but was the worst after I had the brain tumor diagnosis. Just get a pair. And to drama queens, create your own, don’t try to adopt my challenges and add to them in the process).